CSN Login
Members Online: 20

CA125 went up all else is good, should I be worried?

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I went to the MD Anderson today for my 3 year checkup.  Pelvic exam and everything was good.  They poked and prodded me for a while.  Dr. Levenbach said see you in 6 months.  Well just got the results of the CA125 and it went up to 61.  Now mine has been running a steady 41 for a year and a half.  So I am freaking out.  I feel great.  Have gained a little weight but am otherwise doing fine. 
A year and a half ago it went from 20's post treatment to 41 and then remained steady til now.  I know some of you gals monitor this marker and just was wondering what you thought.  The nurse said she would call me back if Dr. Levenbach wanted to see me.  She said watch for any symptoms such as vaginal bleeding.  Last time it went up I couldn't sleep and worried myself sick.  And that was a year and half ago, I am still here. 

Thoughts ladies?  I feel like a big whiney baby since all else went really well and I feel so good. 

 

ConnieSW's picture
ConnieSW
Posts: 537
Joined: Jun 2012

But I don't think you're whiny.  After what we've been through, it doesn't take much to rock our boats.  

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I will have to digest this new turn of events.  I had been lulled into a sense of security after 3 years.  I appreciate your support, Connie.  Thanks for the comment, friend.

california_artist
Posts: 850
Joined: Jan 2009

I was just thinking of you earlier today, wondering how you were doing. So, in response to your question on thoughts, here are a few of mine.

I have held that is nearly impossible to get rid of every single cancer cell, no matter how you try to defeat them. With this in mind, I do try to thwart them so their numbers remain low enough to NOT require a new blood supply. That getting their own source of food and nourishment is what whacks us over the head. So, might I suggest that you act as though you got your diagnosis or are activelly in the process of keeping the number of cells under control and to that end use all those things we talked of long ago:

Deep breathing for a few minutes, several times a day to defeat an anerobic cellular environment. and to provide an opportunity for your body to man your immune system. As long as you are stressed out and your body fells threatened, most activities are directed at arming a defense against an outside invader and your immune system takes a break from killing cancer.

Green tea, steeped for 30 minutes, then lemon added and consumed within the hour

Turmeric at the same time as black pepper and olive oil, as that seems to work on even pancreatic cancer per a woman doctor at M.D. Anderson's study

Ginger, raw, about a 1/4 in slice nibbled on at some point during the day-some studies suggest ginger is as effective as chemo in fightin ovarian cancer-University of Michigan.

Exercise-

Happiness

concentrate the diet on alkaline, no or few meats  -no artificial sweeteners, alcohol, --look up a chart on the web

Norma, we go way back. just mount a defense, regardless of other things, I would not just accept that things are well. Think of what your life was like in the year or two before your original diagnosis and try to avoid any of those things that might have crept back into your daily activities.

Warmest hugs ever,

Claudia

I am recovering from some sort of bronchial thing and the lack of oxygen to the brain may make this a less than stellar response.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

So very glad you reminded me of these things.  I will take them to heart.  I have had some major sinus issues in the past few months.  Hope your bronchial thing gets better. 

Warm hugs and lots of them right back to you....

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

My doctor has always said the CA 125 is just a number.  He does not get concerned unless there are symptoms, which I have never had any symptoms at all, or there are changes in the CAT scan.   Maybe you could have the CA 125 rechecked in 3 months instead of 6 months to put your mind at ease.  Continue to enjoy each day.  In peace and caring.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I think that is a good idea to go back in 3 months instead of 6.  The nurse did not seem that concerned about the slight rise as all else checks out fine.  I hope you are doing ok.  Been reading your posts and thinking of you.

You have made me feel better.  Thanks so much!!!

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I think that is a good idea to go back in 3 months instead of 6.  The nurse did not seem that concerned about the slight rise as all else checks out fine.  I hope you are doing ok.  Been reading your posts and thinking of you.

You have made me feel better.  Thanks so much!!!

debrajo's picture
debrajo
Posts: 731
Joined: Sep 2011

Maybe I'm a big whiny baby, too, but that would scare me to death.  I guess if the ca125 is a marker for you, I'd worry, if not and Dr. seems ok I would maybe be able to get my heart started again.  For me, the ca125 is the ONLY test they do, no scans, MRI, Cat/Pet, so I Live by that darn number.  I agree with Claudia, it's defensive mode time, and instead of three month recheck, how about one month or six weeks?  I couldn't stand the whole three month wait.  Don't want to be the downer here, but don't want this monster to sneak up on you.  Your NED time gives me hope.  Remember, I'm right over here in Vidor, 20 minutes away, if you need ANYTHING.  My home phone is 4097862819.  Best to you, Debrajo

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I am going to try and go into the offense mode like you said.  Have gained some weight and eaten whatever I want, especially through the holidays.  Back on the no sugar and healthy food regimen.  Exercise and deep breathing....etc.  So very much appreciate your support!!! Hug around the neck....

HellieC
Posts: 425
Joined: Nov 2010

I think we all worry about any change, no matter how small - it's not whiney - it's human nature! 

I think that the CA125 can go up due to inflammation or infection, so it is possible to see a change that is not cancer related.  The suggestion to ask for a re-check in 3 months, rather than 6 months sounds a good one.  In the meantime, I think the diet advice etc is probably the way to go.  But, above all else, keep reminding yourself that you feel well!

Kindest wishes
Helen

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I do feel fine.  Great actually.  I had to laugh about the worry about change.  I do.  We have a business and every day there is some kind of change to which I have had to adjust.  That is the not the nature of life, though, is it? 

Seems like the ladies have all suggested a recheck in 3 months.  I think that is a good plan.  Won't hurt and will ease my mind a bit. 

YOU guys are the best.   Thank you so very much for the support. 

txtrisha55's picture
txtrisha55
Posts: 423
Joined: Apr 2011

Congratulations on the good report that everything looked good.  The number is just that a number it could be anything.  My dr told me that if anything was going on in the abdomin (not related to cancer) was going on the number could be elevated.  If everything else is clear I do not think I would be worried about it but would go back in 3 months instead of 6.  No use worry for 6 months.  Yes the holidays people tend to go off the normal eating and then in the new year start the normal eating again.  Praying for you. trish

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Good advice.  I can at least get another CA 125 in 3 months.  I really do feel fine.  I am a worrier.  My husband chides me all the time because I worry.  The prayers are very much appreciated....thanks dear Trish.

NorahS
Posts: 93
Joined: Dec 2012

...is to think about it not as a 'worry' but as 'waiting'.

Recently, I have come to the realization that developing the art of waiting is - and will continue to be - huge in my recovery.

So my suggestion is that you focus on your decision to wait only 3 months for a new CA125 test  <-this is a positive thought for your positive action.

All the best to you.  

 

  

 

 

ConnieSW's picture
ConnieSW
Posts: 537
Joined: Jun 2012

Thanks, Norah

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

 

WAIT IS A 4 LETTER WORD!!!!!

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

So true!!!!  Smile

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Dr Levenbach's office called me yesterday to schedule a CT Scan, X-rays, and bloodwork for Friday Feb 1.  He saw the CA 125 and scheduled the tests.  I am afraid but also comforted by the fact I have one of the top doctors in the country at one of the best hospitals in the world.  Going to put on my big girl panties and quit whining.  I will pray this is a false alarm and hope the rise is just a fluke. 

Everything in my life is going so well right now.  I had put the cancer way back in my mind.  Now it is here again rearing it's head.  You gals who are battling it are so very brave.  I am always uplifted by the posts of those who keep up their courage.  You are my heros.  I am going to fight this thing.  I have way too much to live for right now.

I have had 3 wonderful years of NED.  For which I consider myself extremely lucky by God's grace.  I feel great.  No symptoms.  Just a 20 poing rise in the CA 125 from 40 which it has been for over a year to 62 points. 

Will have to wait.  Like you said Jazzy WAIT is a four lettered word.  hahaha....wait and pray.  PRAY is also a four lettered word.  Going to do a lot of that....praying for all of you too....

HellieC
Posts: 425
Joined: Nov 2010

So pleased you are being followed up.  Sounds like you have a really good gyn/onc who's not taking any chances.  I know how you must be feeling (I'm on my third recurrence, so I've been "through the loop" of tests etc several times!).  It's hard when you are so far down the path of NED to have to think about cancer again, but I hope and pray that this is just a false alarm and the CA 125 is raised for some other reason.

Thinking of you
Helen

laura25's picture
laura25
Posts: 155
Joined: Mar 2011

Hi Norma.. Just wanted to let you know I will be thinking of you tomorrow.   When will you find out the results?

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Your kind words helped a lot.  I am not good at waiting for anything.  As old as I am you would think I would be able to wait.  Focus on the positive.  And there is a lot of positive to focus on.  I am 3 yrs past treatment with no detectable cancer.  That is good and I am going to dwell on that.  My doctor is one of the top doctors in the country and I am blessed to go to MD Anderson in Houston.  I have to put my trust in that.  Dr. Levenbach is not usually one to be overly optomistic.  In the beginning he was a downer.  This last visit (prior to the results of the CA 125) he was very optomistic.  Said I was doing great.  I am going to just let that make me at ease. 

The comments from all the ladies here have made me feel so much better.  Makes this journey so much easier to have you.  Pray for you guys everyday.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Sorry but not kept up on this topic, and finally got to review some recent postings.  

Glad your doc is well renowned and you feel comfortable and have trust...that's truly 1/2 of the battle with this disease!!!  What just came to  my mind, can your doc follow the CA125 marker????  Now I know all of us like to follow it and wondering if he cannot, meaning the movement doesn't show a darn thing with new cancer...means nothing!!!  My CA125 is "very" reliable according to my doc, and can't follow with everyone.  Believe you me, I've had many on-going conversations with my doc about this as I always second guess him, but he has been right on the mark.  

Prior to chemo my CA125 was well over 500 and after EACH treatment it consistently came down and found a normal of 5.  My last appt last week, as reviewed a CT and my CA125, it had gone up to 11, but I've been fighting a bad cold and upper congestion in my head and chest.  As to why I had the "non-cancerous" spot on the lung...so he was just fine with this showing.  Any type of inflammation does affect the movement of this marker, too.  .

Wanted to bring this up as many of us rely so much on the CA125 when in fact, it's not really showing anything new.  So...I'm hoping and praying this is right on the money with you, as remember you feel great!!!!!  Hopefully you can keep this in the back of your mind and think and visualize HOPE!!!

Norma, we're all here for you and I just love the picture on your profile!!!!

 

Best to you and keep that beautiful smile.....

Jan

debrajo's picture
debrajo
Posts: 731
Joined: Sep 2011

I am soooo glad you are going back to get the check ups done!  Waiting is the biggest stresser we have and we just don't need any more.  You know where I am and how to reach me.  If you need transportation AT ANY TIME I am here.  Will be praying that this is the only trip you have to make for the next six months!  Love, Debra

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

i am typing this on my phone....screen is so small...how do these kids send messges....laura.jazzy nd debrajo...love you guys.i am coping.  ifeel great except for ...having computer withdrals...laura...praying for your pet scan...i cant read what i typed...too small...will say more later...love you ladies

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Hope you are going to get good results from your tests on Feb 1.  May you have many more years of NED.  Enjoy each day.  In peace and caring.   

laura25's picture
laura25
Posts: 155
Joined: Mar 2011

Hi Norma,  Just wanted to let you know I'm thinking of you.  I go for my PET scan on 2/7, my knees are starting to shake.    Sounds like you are in great hands, I will keep you in my prayers. 

-Laura

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Wishing you good results on your PET scan on Feb7.  Hope you can have worry free time until you have something to worry about.  I know that is easier said than done.  Do something fun to divert your attention.  In peace and caring.

nempark
Posts: 579
Joined: Apr 2010

Laura, we all know what the waiting game is like.  Please do your best to keep calm.  I know ----easier said than done.

nempark
Posts: 579
Joined: Apr 2010

Just to let you know I am thinking of you and wishing you good health and happiness.  Boy, do I know how much you are worring?  When my daughter was in hospital, I had a cat scan and the Doc's office was just around the corner from her room on the same floor and I never went for the results.  I did not want to know.  It turned out normal. (I went for the results after she passed)  Funny the ca 125 is not a marker for me.  My Doc never checks it.  

Double Whammy's picture
Double Whammy
Posts: 2263
Joined: Jun 2010

and both the CA125 and PET are ok.  I'm glad your onc is checking into the rise in you CA125 and hope the results will put your (and our) minds at ease.

Sending hugs and prayers.  Get your computer fixed!

Suzanne

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I finally on a computer whose screen I can read.  My laptop is in the shop.  Of all times for the thing to break down...

I can't begin to thank you ladies enough for your support.  It means the world to me and has given me great comfort. {{{ DebraJo, Claudia, Connie, Jan, Helene, Laura, Nempark, Norah, Suzanne, RO, Trisha}}}}....hugs to you for your wonderful comments. 

I am going to go into this with a spirit of adventure and hope like I did on the beginning of this journey. CT Scan is on Friday...with chest-xray and blood work.  I will concentrate on the positive.  I have been NED for 3 years....I feel wonderful.  Am in good health except for the pesky 3 years ago.  I can touch my toes. 

When I wake up in the night I count my blessings and thank God for these wonderful years.  I ask for grace and know that God heals us in all ways.  I firmly believe everything happens for a reason. 

As a little girl (if i have told this story before forgive me, I am old and repeat myself) I did embroidery.  The front shows all the beautiful stitckes and picture.  The back looks knarly and has knots and no discernable patter.  I think life is like that.  We don't see the beautiful picture quite yet.  Just the back.  One day we will see the picture and understand.  That is my story and I am sticking to it....

TODAY IS MY 63rd birthday!!!!  Made it this far...and hope for more to come....

My thanks and prayers to you ladies....love you!!!

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

You look simply marvelous!!!  I love your strong and positive attitude.  Remember, our minds have such a strong control over our bodies and I know and feel it in my bones, you'll have good results that we're praying for daily.  

 

Enjoy this special day...let others pamper you as IT'S NORMAS BIRTHDAY!!!

 

Keep us posted on all your results and tell your docs you expect nothing but great news!!!!!Kiss

Jan

NorahS
Posts: 93
Joined: Dec 2012

I must say....63 looks very good on you!  Cool

 

 

 

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Kiss

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Kiss

laura25's picture
laura25
Posts: 155
Joined: Mar 2011

Wishing you a VERY Happy Birthday.... ENJOY YOURSELF!!!!! 

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

May you be blessed with many more.  Again wishing you good results from your upcoming tests.   In peace and caring.

Sisters three's picture
Sisters three
Posts: 149
Joined: Nov 2012

I hope you are eating out!!!!!!!!

 

ConnieSW's picture
ConnieSW
Posts: 537
Joined: Jun 2012

Hope you are enjoying every minute and will have even more to celebrate in a few days.  Good luck.

debrajo's picture
debrajo
Posts: 731
Joined: Sep 2011

Happy Birthday!  You are just ahead of me(61 in Dec.) and I hope you stay ahead of me for the next 30 years!  Every thing is going to be alright....I have an inside track to the Good Lord!  Love, debra

HellieC
Posts: 425
Joined: Nov 2010

Happy Birthday, Norma.  Love the embroidery allegory - never thought of life like that, but it so vivid in my mind now!

Fingers crossed that scans are clear and you continue to dance with NED.

Helen

cheerful
Posts: 114
Joined: Apr 2011

Hi Norma:

 

  Happy Belated Birthday - hope you enjoyed your special day.  I hope you have many more birthdays to come in the years ahead.

 

Cheerful

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Thank you for the wonderful and sweet messages...I appreciate them so very much!!!

If any of you are on Facebook send me a Privat message and I will give you my name to FRIEND...

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

went for ct scan, blood work, and chest xray.....i love the mocha barium stuff. wil find out results wed.  

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Wishing you good results on Wed. Hope you are not worrying too much as you wait.  In peace and caring.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Fingers and toes are all crossed for all good results!!!!!  

 

Hugs,

Jan

sunflash's picture
sunflash
Posts: 144
Joined: Aug 2011

I'm glad you went for further tests. I know it'll be an agonizing wait until Wednesday, but hopefully you can find ways to stay busy enough the time will pass quickly!

Praying for good results for you!!

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

you ladies make the waiting easier.Kiss

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

you ladies make the waiting easier.Kiss

laura25's picture
laura25
Posts: 155
Joined: Mar 2011

Thinking of you Norma!  I go for PET on Thurs and meet with Dr the following week....  I've been keeping myself busy with lots of housework, going to the gym and cleaning out closets.  My husband jokes that every 3 months the house is **** and span!  Just trying to use the nervous energy for something good!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network